The Frank Diary of Anne

I am now about 2 months on from finishing my chemotherapy, and things are going well. We had our wedding on the 11th July as planned and it was a fantastic day. I am still getting really tired a lot and have to have “rest” days at home. I was so exhausted the week after the wedding that I was a bit unwell, but the hospital said that there was nothing wrong, and that I just needed to rest. We had a lovely week off and spent a few days at a lovely spa hotel in Cardiff which helped a lot.

I am so pleased we were able to have the wedding that we wanted, it was really good fun, and I have attached a picture:-

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The PET scan showed……… the tumour has gone!!!!!

Got the news this morning at the hospital from the consultant. I am so pleased and relieved and so is Chris.

The consultant said that it was an excellent result and the PET scan results were very accurate.

It will take 3 to 6 months for my immune system to recover and I must just take it easy for a while. We just chatted about a few other things and they he said I could go. I saw my other consultant in the corridor and thanked her for everything they had done for me.

All that happens now is that I have to have a check up every three months for two years, and then every six months for eight years.

The consultant said to try not to be anxious and keep checking for lumps, but if anything did come up just to come straight back to the clinic.

After that, I went downstairs to the Day Case Unit and told a couple of the chemo nurses the good news, they were really pleased.

Then I rang my Dad at work to tell him and he was so pleased too. I told him we were going home to put the champagne in the fridge and he said not to drink too much (typical dad comment).

Then we went home and I sat on the sofa for a while trying to take it in.  I thought that the cancer MUST have gone after all that chemo, but it isn’t until you hear it yourself from the doctors that it becomes real.

As it was a nice day we decided to go to the beach so we ran about in the sea and walked along the beach and had an ice cream to celebrate. Then we went to a vineyard and did some wine tasting and then we went out for lunch.

The champagne is still in the fridge at the moment, I thought I would wait until my Dad came to open it so we can celebrate properly.

Even now, it is only sinking in that this is finally over.  This has certainly been a horrible experience, I would like to say one that I will forget, but I will never forget it.

On the plus side, it has made me see things in a totally different light, and I really think it has changed me.  I now appreciate those close to me so much more. The relationship that I have with Chris was strong anyway, but I think that this has brought us closer together and we realise that if we can get through this together, we can pretty much get through anything.

So many things I took for granted before as I am sure many people do, and I take nothing for granted now. People still look at me with pity because I have no hair, which annoys me because I don’t really care about it anymore. I am just grateful to still be here!

I now find it extremely difficult to tolerate people who moan about things that they consider to be “problems” but which are such minor things.

All in all, I am just so glad that it is over now, and I can get on with enjoying life and  spending time with the people close to me. I am looking forward to the future now, and Chris and I have got many nice things planned to make up for the last seven months. We plan to do all the things that we have thought about doing and never quite got round to. Most importantly, we can enjoy our wedding and start our married life together knowing that I am on the road to recovery.

Thank you once again to all the people who have given me advice, support and just kept my spirits up through these last few months. You will never know how much it has been appreciated.

But thanks most of all to my Dad and to Chris – I couldn’t have got through it without you both.

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I had my scan yesterday. I had to go to Sussex University where they have a clinical imaging department. I was taken into a small room with a bed and they put a canular in my arm (thought I had seen the last of those!) and then they put the radioactive sugar in. The lady that did it had to wear protective clothing in case the stuff got spilled on her and I had to use a special toilet that gets rid of radioactive waste. The  stuff that went into my arm came in a lead container which was inside a metal box with all these warnings on the front. Then they took my blood sugar which was low as you have to not eat for 6 hours prior to the scan so that the images show up clearly. Then I had to lie down for an hour to let the stuff travel through my system. I was quite bored and I wasn’t allowed to read a book or anything as glucose rushes to the parts of your body that move and that would show up on the scan. They told me that the scanner was basically a CT scanner with a Geiger counter inside it. The radioactive stuff would travel to cells that were multiplying quickly such as cancer cells and this would light up on the scan. It is all very clever. The radioactive stuff they put in me was only a tiny amount but the lady told me it cost £500!.

So then I had to lie very still in the scanner without moving. It was different to the CT scanner. This one was like a tunnel and the bit I was lying on shifted in and out of the tunnel at various stages. I felt uncomfortable in the scanner, it reminded me of when I first got ill and also it was very claustrophobic, I felt very closed in and couldn’t see out the other end. I was in there for 25 mins but it felt like about four hours! Then I was allowed to go home.

So now I just have to wait for next week for the results. Apparently, the results are discussed at the weekly meeting of all the haematology consultants at Worthing and Brighton hospitals to see if anything further needs to be done. I hope not.

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I now have a date for my PET scan!! It is next Wednesday 10th June at 1.45pm. I then have a clinic appointment to get the results on the 18th June at 8.30am (thought it was better to have an early appointment and get it over with). 

The information has come through from the hospital today, and it says that I am not allowed to eat for 6 hours before the scan, which will be done at the imaging department at Sussex University, and they will inject me with a radioative sugar. Then I have to lie down for an hour to let the sugar substance work its way through my body. Then I lie in the scanner for an hour while it does what it has to do.  Then I can go home. 

The results will then be discussed at a meeting in Brighton by my consultants and the haematology team at Brighton hospital and then I will get the results at my clinic appointment. I am already so nervous. 

I am getting the results sooner than I thought I would, I did have a clinic appointment in July but I have been able to move this forward.  I have been doing quite well, am very busy at the moment at work and at home and I think I may have been overdoing it a bit, so am taking a couple of “rest” days at the moment. I have had a horrible mouth problem where I had sore bits,  cuts and ulcers in my mouth as a result of the chemo, so I had to go to the GP and get some hydrocortisone tablets and anti viral tablets. They seem to have done the trick though.

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A variation on a theme for you all today.

Since day 1 when I set up this Weblog for Anne I haven’t commented on her entries, I originally set it up as an outlet for her, of course I was always there as were both of our families and her closest friends, but I thought it would be a good way to record things, she could always see how she felt during each cycle of treatment and it would also give her something to look back at, which will always remind her (and us) how strong she is, and also how well she can cope with extreme situations.

It has however proved to be more than that.

Its given Anne a way to communicate with the masses of people that care about her, and also provided a way for the love we have for her to be shown, I know that all of your kind comments have given her strength during the low points.

It’s also given her an outlet, somewhere to say whatever she wanted wherever she was, without bottling anything up.

Where does it go now?

I’m sure Anne will continue to update her blog as we go towards the upcoming tests, and I hope that going forward she can continue to use it, hopefully with more positive entries. Whatever happens, I know it has been worthwhile. Thank you all for your very kind and supportive comments, we certainly couldn’t have done it without you and we look forward to seeing you at our wedding, which has managed to creep up on us almost unnoticed!

Chris

Thankyou

Thank you to those who have made such kind comments on my last post.  

People often say to me how brave they think I have been, but in reality, braveness does not really come into it. I did what the doctors told me to do, and tried to be sensible, have the treatment and that was it really. The last six months have been extremely hard, but the alternative to going through the treatment was not something I wanted to contemplate! I think that most people who find themselves in this sort of position would do whatever they could to get back to health again and take the doctor’s advice.  

I am very tired this week. I spent the weekend in bed mostly or lying on the sofa and did not go out for two days, the weather was awful so it was not worth going out anyway. I went to work yesterday but was exhausted by the afternoon so came home at about 4.00. I am having a “rest day” today, just sleeping, reading the paper and watching the tv etc. 

I was just reading quite an interesting article in the paper about something called “chemobrain” where people’s cognitive skills are affected long term by chemo drugs. I have not heard of this before, and the article is saying that people are not warned about it before they have chemotherapy. People apparently feel the effects of the tiredness and the forgetfulness months and even years after their treatment has finished. The recommendation is that you keep the brain active with puzzles and things and this helps. Even though many people thought I was bonkers to keep going to work throughout my treatment, I am so glad I did because I really felt that it was helping to put my mind to other things. I do forget things sometimes and get in a muddle, but generally, I think my brain has been ok. I found it is easy to become very lazy and not do a thing, but even though physically you may be a bit of a wreck, the mental side still needs stimulating. 

So, I start my injections today to boost the bone marrow. I have come off the steroids today for the last time. I am constantly hungry and have been waking up in the night again, but am drinking plenty of water to try and help flush them out of my system!

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Well I survived the last chemo session! So glad it is over now. 

Dad came with me and we were at the hospital for seven hours in total. We didn’t get home until 7.00 last night. I felt very sleepy and went to bed after dinner. Today, I did not actually get out of bed until 1.00pm and then I had a nice bath to ease the aches and pains. I feel a bit fuzzy round the edges today but do not feel sick at least. My hands, face and knees have swollen a little bit because of the steroids, but it isn’t too bad. I am on the steroids for five days, have to have the injections to boost my blood count on days 5 – 9 of the cycle, and I have to take the antibiotics for the pneumonia three days a week for six months to stop it from coming back.  

I gave the nurses a big box of chocolates and a thank you card just as a way of saying thank you to them for all their help and support. They really have been wonderful, so kind and patient with me. 

They gave me a helpful booklet about what to do at the end of chemotherapy and it has useful information in it, such as how to look after yourself, and to take it easy and rest, and what shampoo to use when hair grows back and what cream to use on your skin etc. 

They said that some people feel that when their treatment stops and they no longer have as much contact with the hospital, they feel as though their safety net has gone, but they have told me that I can ring the hospital at any time if I feel unwell or am worried about anything. This is good as I won’t have to go via my hopeless GPs to get to see the haematology team. 

So now, I just have to rest and take it easy until I have my scan in five weeks time. I will try and work as much as I can, but it will take six months to a year before I recover from this. My energy and immune system will still be low for some time yet so I will still have to remember to be careful to avoid crowded places and potential infection catching situations. 

I would just like to thank all the friends and family who have given me such phenomenal support and encouragement over the past six months. My wonderful friends who have visited me and sent me presents to cheer me up, kept me sane and made me laugh when I needed it. My amazing future in-laws, who have been so kind and generous with their gifts and words of encouragement.  

Especially my parents and Chris who have been a tower of strength to me. I don’t believe I could have done it without you. Dad – who has attended every chemotherapy session with me and visited me every day without fail when I was in hospital,  sat by my side throughout, keeping me company and cheering me up when I cry, always looking on the positive side and reminding me of this when I feel unhappy. Mum – who has made me laugh with her funny stories and explained to me how I am feeling even when I don’t understand myself. And of course Chris, my wonderful future husband who has been the most supportive, caring and patient partner that anyone could wish for, looking after me and caring for me in his own gentle way, his never ending support and love have really helped me so much. His visits three times a day when I was in hospital kept me going through what I can honestly say was one of the lowest points of my life. 

So, thank you everyone for reading this blog so far, and for the fantastic comments you have written. I will of course update it again when it comes to scan time and in the meantime, would ask that you keep your fingers crossed for me once more that this is the end of this particular episode of my life.

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I saw the consultant yesterday and he said that my blood count was slightly low, but nothing to worry about, he would still let me have the chemotherapy today. I had to have a bone marrow stimulating injection just to be on the safe side. 

So today is the last session. The doctor said that after today,  I will have to go and have my PET scan in about five weeks time and I will go back to the clinic about two weeks after that to get the results. He said that if the result shows that there are still cancerous cells I will have to have further treatment, but if it is clear, I will just have to go back to the clinic every three months for two years for a blood test to make sure it hasn’t come back and then every six months for eight years. He said that he thought I would float through the treatment without any complications, but there have been a few but I got there in the end. 

So at 1.00 today I will be off to the medical day case unit for hopefully the last time. I am just going to pop out to Waitrose in a minute to buy a nice box of chocolates for my nurses who have been fantastic with me throughout the treatment. 

I am hoping that I won’t feel too bad after this one. The consultant said that it may take 6 months to a year to recover from this fully, it will be a few months before my immunity and energy levels start to recover so even though my treatment will have finished, I will still have to be careful to avoid infection. He said that I must have the flu jab too which will offer some protection. 

Will update again this weekend!

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I am counting down the days now. It was (hopefully) one week yesterday until the last treatment. 

I am seeing my consultant on Thursday morning and having a blood test to make sure blood count is up to scratch! Then hospital on Friday, all being well, for the last “drip feed” as my boss calls it. 

I am hoping that the consultant is going to say that I am ok now, and I won’t need any further treatments. I feel ok, just very very tired now. It isn’t like normal tiredness where you just carry on doing what you have to do and perhaps have a couple of early nights, it is like complete exhaustion some days, and the only thing to do is to go to bed (or not get out of bed!). I have never felt anything like it before. The tiredness seems a little better in the last few days, and my head is much better than it was last week.  I feel as though I have had enough now. My body has had about as much as it can take over the last few months, but seems to have coped with the treatment so far pretty well. 

So, this could be my last Saturday as a chemotheray patient. I am asking all the lovely subscribers to my blog who give me so much support with their kind comments to keep their fingers crossed for me!!

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I am back at work today. Last week was pretty much a disaster!! I felt too dizzy and light headed, I just could not work at all really. I went to the hospital again on Friday because I nearly fainted again. Luckily, I knew what was coming this time and was able to sit down before I fell down. I was at the hospital most of Friday and they could not find anything wrong with me. They said that my temperature, blood pressure and blood cell count were fine (the injections are working!) and I was showing no signs of an infection. The doctor said that I had nothing to worry about and I just had to take it easy and not rush about.

Over the course of the weekend I felt better, and now my head is ok, I am just feeling extreme tiredness. I have heard that the fatigue can get worse during the last stages of the treatment. I think this is what may be happening. Also, when I started this treatment, the consultant warned me that menstruation can stop and it did. On Friday, it strangely came back again which I think may have contributed to this problem with my head.

I am pleased it has started again even though I had stomach pains all Saturday, as I think it shows that my body is fighting to function normally. Also, chemotherapy can bring on early menopause, and that was always in the back of my mind too.

So, I am hoping to have a more productive week this week. As long as I keep going to bed very early, I think it will be ok. We ended up having a fun weekend babysitting our little nieces and nephews on Saturday night, going to a BBQ on Sunday and out for lunch in Arundel yesterday.

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